My blog

Oh no! I'm not much of a "dog-person", but I'm sitting her with
tears running down my face!! This is very sad..................
Lots of hugs, Linda

I want to thank you for your letter, because I makes me realize that this
condition is not hopeless please forgive me for my writing and spelling today
is one of my bad days. And I am so happy that your husband is doing well.
again I want to think you.

sincerely, Sheila rodriguez

Hi Kimber.....WELCOME my friend! I hope you will find as much
support and information as I have on this site. These are wonderful
people!! Talk to you again, soon, I hope!
Lots of Hugs, Linda

Hi Sandi,

Dee is fortunate to have you as a friend. You truly have to be a special person to being going through what you are with your son and still have the energy and heart to help her.

My husband was diagnosed with Shy-Drager {MSA} last year. HIs vocal cords are paralyzed and he has a trach, he also has an indwellling foley catheter. Five years ago, we were farming and now he can't drive, walk unassisted, get in or out of bed without help, he has to have help with bathing and dressing. Some days, he can barely walk. Its lilke his feet freeze to the floor. He has difficulty swallowing and his speech is getting to where it is hard to hear him sometimes.

I am glad Dee is going to another doctor. There are a lot of caring compassionate health care people out there but sometimes you have to go through the heartless ones to get to them. Please let Dee know that she is not going through this alone, there is a bunch of us here in this group that knows how she feels and what she is fighting every day.

Take care, Kathy

PS, hope your son is doing good

Hi again, Anna,
I have both the AOL instant Messanger - Kru20Laws
and the MSN Instant Messanger - Kru20Law - "s" is "silent".lol
I would love to talk to you, or anyone, by IM. I love to gab!
Please, add me, then hollor at me when you are on, k? Thanks!
Lots of Hugs, Linda

Hello Carole!
How are you doing? I haven't heard from you lately, are you OK? I
hope you are. Please, let me know, k?
Lots of Hugs, Linda

Hi everyone,
I just wanted to report that Rob(dx SDS/MSA 3/98) and I are back from
our trip to Japan. We had a wonderful time and I am pleased to
report that Rob did extremely well, aside from coming down with a
sore throat which appeared to be caused by a viral infection. He
bounced back after a couple of days, and really only missed a half
day of touring.
We were traveling by ship most of the time, with daily bus tours to
various sites in Japan. When Rob came down with a sore throat, we
went to see the ship's doctor. When I mentioned that Rob had Shy-
Drager and pulled our my write-up, I was shocked and amazed that the
doc not only knew what it was but seemed quite up to speed on it. He
said he had actually diagnosed a couple of cases in the ER in
Australia, which is where is is from.
I've got a lot of catching up to do, but I did see that we lost a
couple of folks. Rob and I extend our condolences to the families of
those who have finally been released from this illness.
Carol & Rob

Hello!
Beverly. My name is Barbara. My husband, Ralph,(who was dx with SDS-MSA
in '95) had the double vision for a very long time. Tried all kinds of
glasses. Finally had some that were specially ground for him. The eye
specialist called them, cylinder, I think. It was amazing the difference
it made. Of course you must accept the fact that the double vision is a
part of this awful illness.
But being isolated due to not being able to read is awful by itself.
I am hoping that someone can help. My husband (Roger) has had MSA
since 1994.
I have watched him deteriorate day by day. Recently his vision has got
much worse.
He is experiencing double vision , to the point he can not read at all.
Also if he covers one eye, his eye stings. He has just given up. Any
suggestions?
The stinging is probably from the strain and the weakness of the eyes.
They are probably quite sensitive to the light too. There are drops for
that. Please try to get him to the specialist and see what can be done
for him. It will make a lot of difference in his emotional well being.
I wish you the best. There are so many things to contend with and think
about and then do in order that the loved one is comfortable.
Here is a hug for you.
Barb
Thanks
Bev Britnell
Ont. Canada
To unsubscribe from this group, send an email to:
shydrager-unsubscribe@egroups.com

Hi Angie,

Welcome to the group, sorry you have to be here. My husband was diagnosed with SDS last year. For two years, we didn't know what was wrong with him, went to doctors everywhere and finally Mayo clinic in Jax Fla. diagnosed him. He has a trach and indwelling foley cath. He is very emotional now, cries easily. HE has been on Prozac for a year and even though he still gets emotional, he continues to fight this disease. Maybe your father's doctor could prescribe an anti-depressant for him.

I know its hard for you to see your father's condition worsen. I think it is harder on us family members than it is our loved ones. I look at mine and Dave's wedding pictures and see the big strong man he was then and to see him now need help with bathing, dressing and to turn over in bed, it breaks my heart.

Just remember, the life span for this disease is longer than the literature you read. Encourage him to get out and go as long as he can. We have made an effort to travel about every three months. Exercise is very important for him. Speech and swallowing therapy will help.

If your ever need to talk, feel free to email me privately anytime. Sorry I can't be of more help, Just remember, we are all here for you.

Take care, Kathy

Hello!
I am hoping that someone can help. My husband (Roger) has had MSA
since 1994.
I have watched him deteriorate day by day. Recently his vision has got
much worse.
He is experiencing double vision , to the point he can not read at all.
Also if he covers one eye, his eye stings. He has just given up. Any
suggestions? Thanks
Bev Britnell
Ont. Canada

In case we've missed anyone in our individual canvassing I'm sending this

to the list. Please don't reply to the list when you send in

your pledge.

Reply to one of the canvassing volunteers:

Bill Werre b.werre@...

Cindy Vargas Cav285@...

Pam Bower pbower@...

---

We are very pleased to announce that our online Shy-Drager/MSA
email support group has officially grown to 500 members!
Although we all wish this disorder did not exist we are always happy
that those who need support and information are able to find their

Hi Judy, thanks for the info. Hope everything is going well for you.

Take care, Kathy

Hello friends

I guess by now you all realize I am a devoted dog nut, with 4 of my own. I also spent time working in an animal shelter, as well as being a foster mom to abandoned kittens, who were not yet old enough to eat on their own, as well as to a wonderful siberian husky named Trooper, who's owner was going to have put to sleep at the age of 6 years, simply because he fought with his lead dog so he could no longer use him for sledding, and didn't *have the time* to find him a good home, or any home for that matter. I had Trooper for 4 months during which time I did some training with him, got him housebroken, and found him a home with 2 great women who love him to death. And as a matter of fact, Trooper is the daddy to my 2 puppies.

Anyhow, I received a story from my Siberian husky email list that really touched me because of my love of these four legged fur angels. And I know there are a few dog lover here as well so I wanted to share this story with you too. Just a warning-have the kleenex ready.

When I was a puppy, I entertained you with my antics and made you laugh. You
called me your child, and despite a number of chewed shoes and a couple of
murdered throw pillows, I became your best friend. Whenever I was "bad,"
you'd shake your finger at me and ask "How could you?" - but then you'd
relent, and roll me over for a bellyrub. My housebreaking took a little
longer than expected, because you were terribly busy, but we worked on that
together. I remember those nights of nuzzling you in bed and listening to
your confidences and secret dreams, and I believed that life could not be
any more perfect. We went for long walks and runs in the park, car rides,
stops for ice cream (I only got the cone because "ice cream is bad for
dogs," you said), and I took long naps in the sun waiting for you to come
home at the end of the day.
Gradually, you began spending more time at work and on your career, and more
time searching for a human mate. I waited for you patiently, comforted you
through heartbreaks and disappointments, never chided you about bad
decisions, and romped with glee at your homecomings, and when you fell in
love.
She, now your wife, is not a "dog person" - still I welcomed her into our
home, tried to show her affection, and obeyed her. I was happy because you
were happy. Then the human babies came along and I shared your excitement. I
was fascinated by their pinkness, how they smelled, and I wanted to mother
them, too. Only she and you worried that I might hurt them, and I spent most
of my time banished to another room, or to a dog crate. Oh, how I wanted to
love them, but I became a "prisoner of love."
As they began to grow, I became their friend. They clung to my fur and
pulled themselves up on wobbly legs, poked fingers in my eyes, investigated
my ears, and gave me kisses on my nose. I loved everything about them and
their touch - because your touch was now so infrequent - and I would have
defended them with my life if need be. I would sneak into their beds and
listen to their worries and secret dreams, and together we waited for the
sound of your car in the driveway. There had been a time, when others asked
you if you had a dog, that you produced a photo of me from your wallet and
told them stories about me. These past few years, you just answered "yes"
and changed the subject. I had gone from being "your dog" to "just a dog,"
and you resented every expenditure on my behalf.
Now, you have a new career opportunity in another city, and you and they
will be moving to an apartment that does not allow pets. You've made the
right decision for your "family," but there was a time when I was your only
family. I was excited about the car ride until we arrived at the animal
shelter. It smelled of dogs and cats, of fear, of hopelessness. You filled
out the paperwork and said "I know you will find a good home for her."
They shrugged and gave you a pained look. They understand the realities
facing a middle-aged dog, even one with "papers." You had to pry your son's
fingers loose from my collar as he screamed "No, Daddy! Please don't let
them take my dog!" And I worried for him, and what lessons you had just
taught him about friendship and loyalty, about love and responsibility, and
about respect for all life. You gave me a goodbye pat on the head, avoided
my eyes, and politely refused to take my collar and leash with you. You had
a deadline to meet and now I have one, too. After you left, the two nice
ladies said you probably knew about your upcoming move months ago and made
no attempt to find me another good home. They shook their heads and asked
"How could you?"
They are as attentive to us here in the shelter as their busy schedules
allow. They feed us, of course, but I lost my appetite days ago. At first,
whenever anyone passed my pen, I rushed to the front, hoping it was you -
that you had changed your mind - that this was all a bad dream...or I hoped
it would at least be someone who cared, anyone who might save me. When I
realized I could not compete with the frolicking for attention of happy
puppies, oblivious to their own fate, I retreated to a far corner and
waited. I heard her footsteps as she came for me at the end of the day, and
I padded along the aisle after her to a separate room. A blissfully quiet
room. She placed me on the table and rubbed my ears, and told me not to
worry. My heart pounded in anticipation of what was to come, but there was
also a sense of relief. The prisoner of love had run out of days. As is my
nature, I was more concerned about her. The burden which she bears weighs
heavily on her, and I know that, the same way I knew your every mood. She
gently placed a tourniquet around my foreleg as a tear ran down her cheek. I
licked her hand in the same way I used to comfort you so many years ago. She
expertly slid the hypodermic needle into my vein. As I felt the sting and
the cool liquid coursing through my body, I lay down sleepily, looked into
her kind eyes and murmured "How could you?"
Perhaps because she understood my dogspeak, she said "I'm so sorry." She
hugged me, and hurriedly explained it was her job to make sure I went to a
better place, where I wouldn't be ignored or abused or abandoned, or have to
fend for myself - a place of love and light so very different from this
earthly place. And with my last bit of energy, I tried to convey to her with
a thump of my tail that my "How could you?" was not directed at her. It was
you, My Beloved Master, I was thinking of. I will think of you and wait for
you forever. May everyone in your life continue to show you so much loyalty.
The End

When I was a puppy, I entertained you with my antics and made you laugh. You
called me your child, and despite a number of chewed shoes and a couple of
murdered throw pillows, I became your best friend. Whenever I was "bad,"
you'd shake your finger at me and ask "How could you?" - but then you'd
relent, and roll me over for a bellyrub. My housebreaking took a little
longer than expected, because you were terribly busy, but we worked on that
together. I remember those nights of nuzzling you in bed and listening to
your confidences and secret dreams, and I believed that life could not be
any more perfect. We went for long walks and runs in the park, car rides,
stops for ice cream (I only got the cone because "ice cream is bad for
dogs," you said), and I took long naps in the sun waiting for you to come
home at the end of the day.
Gradually, you began spending more time at work and on your career, and more
time searching for a human mate. I waited for you patiently, comforted you
through heartbreaks and disappointments, never chided you about bad
decisions, and romped with glee at your homecomings, and when you fell in
love.
She, now your wife, is not a "dog person" - still I welcomed her into our
home, tried to show her affection, and obeyed her. I was happy because you
were happy. Then the human babies came along and I shared your excitement. I
was fascinated by their pinkness, how they smelled, and I wanted to mother
them, too. Only she and you worried that I might hurt them, and I spent most
of my time banished to another room, or to a dog crate. Oh, how I wanted to
love them, but I became a "prisoner of love."
As they began to grow, I became their friend. They clung to my fur and
pulled themselves up on wobbly legs, poked fingers in my eyes, investigated
my ears, and gave me kisses on my nose. I loved everything about them and
their touch - because your touch was now so infrequent - and I would have
defended them with my life if need be. I would sneak into their beds and
listen to their worries and secret dreams, and together we waited for the
sound of your car in the driveway. There had been a time, when others asked
you if you had a dog, that you produced a photo of me from your wallet and
told them stories about me. These past few years, you just answered "yes"
and changed the subject. I had gone from being "your dog" to "just a dog,"
and you resented every expenditure on my behalf.
Now, you have a new career opportunity in another city, and you and they
will be moving to an apartment that does not allow pets. You've made the
right decision for your "family," but there was a time when I was your only
family. I was excited about the car ride until we arrived at the animal
shelter. It smelled of dogs and cats, of fear, of hopelessness. You filled
out the paperwork and said "I know you will find a good home for her."
They shrugged and gave you a pained look. They understand the realities
facing a middle-aged dog, even one with "papers." You had to pry your son's
fingers loose from my collar as he screamed "No, Daddy! Please don't let
them take my dog!" And I worried for him, and what lessons you had just
taught him about friendship and loyalty, about love and responsibility, and
about respect for all life. You gave me a goodbye pat on the head, avoided
my eyes, and politely refused to take my collar and leash with you. You had
a deadline to meet and now I have one, too. After you left, the two nice
ladies said you probably knew about your upcoming move months ago and made
no attempt to find me another good home. They shook their heads and asked
"How could you?"
They are as attentive to us here in the shelter as their busy schedules
allow. They feed us, of course, but I lost my appetite days ago. At first,
whenever anyone passed my pen, I rushed to the front, hoping it was you -
that you had changed your mind - that this was all a bad dream...or I hoped
it would at least be someone who cared, anyone who might save me. When I
realized I could not compete with the frolicking for attention of happy
puppies, oblivious to their own fate, I retreated to a far corner and
waited. I heard her footsteps as she came for me at the end of the day, and
I padded along the aisle after her to a separate room. A blissfully quiet
room. She placed me on the table and rubbed my ears, and told me not to
worry. My heart pounded in anticipation of what was to come, but there was
also a sense of relief. The prisoner of love had run out of days. As is my
nature, I was more concerned about her. The burden which she bears weighs
heavily on her, and I know that, the same way I knew your every mood. She
gently placed a tourniquet around my foreleg as a tear ran down her cheek. I
licked her hand in the same way I used to comfort you so many years ago. She
expertly slid the hypodermic needle into my vein. As I felt the sting and
the cool liquid coursing through my body, I lay down sleepily, looked into
her kind eyes and murmured "How could you?"
Perhaps because she understood my dogspeak, she said "I'm so sorry." She
hugged me, and hurriedly explained it was her job to make sure I went to a
better place, where I wouldn't be ignored or abused or abandoned, or have to
fend for myself - a place of love and light so very different from this
earthly place. And with my last bit of energy, I tried to convey to her with
a thump of my tail that my "How could you?" was not directed at her. It was
you, My Beloved Master, I was thinking of. I will think of you and wait for
you forever. May everyone in your life continue to show you so much loyalty.
The End

as Karyn knows I am an apheresis patient.My treatment is usually 1
time per month as an out patient. Lasts an hour or 2 and my levels
are brought down. this with Lipitor maintains some sort of quality of
life. I know of many centers in many hospitals that use this for
pancreatitis. (Iset transplant is not an option right now. It is
being done, but still in early stages) this is an accepted form of
preventative as well as emergency treatment to alleviate
pancreatitis. surgeons are not aware of it and do not easily accept
it. Cardiologists are just beginning to come around. A hematologist
or oncoligist can give you info. Or go to the web under APHERESIS.
also BEFORE your pancrease burns out insulin therapy is a great way
to controll attacks, wether you are diabetic or not. I have had these
treatments since 1994, when they were just experimental, to save my
life. If you need help or info I will be glad to help. REMEmBER this
please I went to 7 specialists and spent 10 yrs suffering and
eventually near death before I found the right one. Do your homework
and you won't be sorry. I want to write Oprah too. Where Karyn and
what? thanks Paula

Hello Everyone:
Just a fast note right now. Not able to get online to post right now, but
wanted to put in this Website that our Pastor gave me yesterday. You may want
to look it over , it gives some infro on different things that some of you
may want to know.
Help
(310) 533-1996
www.help4srs.org
Take Care Vera

Thanks Carole
You are so sweet how are you doing?... I will let all know what is going
on with me... thanks again
Hugs and kisses
your pancreatis pal Anna from Michigan

Hi all. I just registered with the group.
My name is Kimber and I'm thirty years old. I've been diagnosed with
chronic pancreatitis for 3 years, but have been having cases of
pancreatitis for 14years (since I was sixteen).
This is the first time I've actually looked for others who share
similar problems.I've had about 19 cases of pancreatitis (I lost
exact
count after case 15). I also have a genetic blood clotting problem
that caused a blood clot in my heart,resulting in a heart attack and
bypass surgery last year.
I've manage to keep a full-time job, mainly because most of my cases
have been about a year apart, though I've had several that were only a
two days to a month apart. Mainly I think I've kept my job because I
work in the health care industry and my boss and coworkers are all
former nurses and are very supportive of my taking care of my health.
I would like to hear from any of you and how you are dealing with this
problem. I've got my due to a birth defect called a pancreatic
divisum.I've been taking enzymes with each meal that disolve in the
stomach and, until my last attack which was two weeks ago, have been
stopping the pain. Now, even with the enzymes, I'm in pain if I eat
anything over 6 grams of fat. I'm not currently able to maintain my
weight, which at the moment is okay, since I'm overweight (have been
most of my life).
Right now, they have me on Vicoden if I have pain, but I have to find
another one without Ibuprofen or Acetamenophen in it since I'm on
blood thinners and can't have either one affecting the medication
that
thins my blood.
Also, for anyone else interested, I've found a website that has other
people's stories of dealing with chronic pancreatitis, though some
other's may already know of it.I know the owner of the site would
like
to hear from any of you. The website address is:
http://www.wf.net/~bbagwell/.
Kimber

Dear MSA Support Group Friends:
I have drafted a letter that I will be sending to my friends and family to
expand our fundraising initiative. Pam suggested that I forward it to the
group. Please feel free modify this text to your own situation to use in
corresponding with your own friends and family.
To our success in conquering MSA!
Sincerely, Cindy V.
Dear Family and Friends,
As most of you know, my dad, Lee, was diagnosed with Multiple Systems Atrophy
(MSA) about three years ago. MSA is (at this time) an incurable disease and
is similar to Parkinson's and other movement disorders. It is also referred
to as Shy-Drager Syndrome. People with MSA are affected by a multitude of
problems including a loss of control of movement, balance, blood pressure, an
inability to walk, talk, swallow and perform other activities.
I am a member of an MSA support group which offers information about this
disease as well as a shoulder to cry on. It is a wonderful group with very
generous people who share their experiences as MSA sufferers and caregivers.
They also supply an abundance of information about the latest developments in
the field.
This group was initiated in 1995 by the Vanderbilt Autonomic Dysfunction
Center so that patients with multiple system atrophy and their caregivers
could communicate with each other throughout the world. The electronic mail
list is open to patients, caregivers, and others who are interested in the
Shy-Drager syndrome. Through use of the electronic "party line," anyone can
ask a question, answer a question, post information on medication and
treatments, share the good and the bad times, etc. A person with a computer
and access to email can join the list by subscribing or by having a friend or
relative subscribe and relay the messages to the list.

Hi all.
My name is Kimber and I'm thirty years old. I've been diagnosed with
chronic
pancreatitis for 3 years, but have been having cases of pancreatitis for
14years (since I was sixteen).
This is the first time I've actually looked for others who share similar
problems.
I've had about 19 cases of pancreatitis (I lost exact count after case
15). I also have
a genetic blood clotting problem that caused a blood clot in my heart,
resulting in a heart attack and bypass surgery last year.
I've manage to keep a full-time job, mainly because most of my cases
have been about a year apart, though I've had several that were only a
two days to a month apart. Mainly I think I've kept my job because I
work in the health care industry and my boss and coworkers are all
former nurses and are very supportive of my taking
care of my health.
I would like to hear from any of you and how you are dealing with this
problem. I've got my due to a birth defect called a pancreatic divisum.
I've been taking enzymes with each meal that disolve in the stomach and,
until my last attack which was two weeks ago, have been stopping the
pain. Now, even with the enzymes, I'm in pain if I eat anything over 6
grams of fat. I'm not currently able to maintain my weight, which at the
moment is okay, since I'm overweight (have been most of my life).
Right now, they have me on Vicoden if I have pain, but I have to find
another one
without Ibuprofen or Acetamenophen in it since I'm on blood thinners and
can't have
either one affecting the medication that thins my blood.
Also, for anyone else interested, I've found a website that has other
people's stories
of dealing with chronic pancreatitis, though some other's may already
know of it.
I know the owner of the site would like to hear from any of you. The
website address is: http://www.wf.net/~bbagwell/.
Kimber

May be this will help you understand the difference in night terrors and plane bad dreams.

God Bless,

Jim Stark

-Christine..
totally made sense and very well put I agree with you there and I to
am stuck int he denial and anger stage....
love Anna

In a message dated 1/29/01 7:59:26 PM Eastern Standard Time, mrsteep1@...
writes:

my useless GI called and told me my counts are going up again
which I knew just from the pain..so now I have to wait for my family doctor
to call and tell me what to do next.. I am so depressed it isn't funny, it
just seems I do all that they tell me and nothing works.. I HATE THIS
DISEASE.....

Oh Anna, I am so sorry your counts are up again. I was hoping that the
removal of your gallbladder would take care of most, if not all, of your
pain. It seems, with this disease, there are no promises no matter what we
have done. I will keep you in my prayers and hope you don't have to go back
to the hospital. Keep us posted on how you are doing.
Hugs & Prayers
Carole

This one has gone to fund Dr. Sid Gilman's Ataxia Clinic at the
University of Michigan.
University of Michigan Health System
1500 E. Medical Center Dr.
Ann Arbor, MI 48109
http://www.med.umich.edu/neuro/ataxia.htm
I'm looking for a couple volunteers to canvass the remaining members not
yet contacted personally. If you want to help and your email software
can easily handle sending to 100 or more individuals at once let me
know.
Thanks,
Pam

christine,
that is great news thanks for sharing.. and it is so precious.. out
of the mouths of babes....
love Anna

Hi all,
This article can be found at:

Wednesday May 9 10:45 PM ET
'Homepage' Virus Hits Outlook Again
By Eric Auchard
NEW YORK (Reuters) - An initially fast-spreading e-mail
worm
nicknamed ``HomePage,'' the cousin of February's ``Anna
Kournikova
(news - web sites)'' virus, hit thousands of users of
Microsoft Outlook
address directories in Asia and Europe on Wednesday.
Office workers in banks and telephone companies and
government
agencies who opened e-mail containing the virus --
technically known as
VBSWG.X -- were suddenly redirected to one of four
sexually explicit
Web pages, experts said.
The virus also triggered a barrage of e-mail to anyone
listed in an affected computer's Outlook e-mail address book, which in
turn overloaded some organization's e-mail systems, according to
anti-virus experts tracking the virus's spread.
But while HomePage once again revealed the vulnerability
of computer networks to virus attacks, no more than 10,000 or so users
were affected, analysts estimated.
The lessons learned in earlier time zones allowed
anti-virus companies to update their software immunization programs,
insulating computer users in the United States from the brunt of the
attacks.
``A lot of people have learned hard lessons. They are a
lot more aware of the need to act quickly,'' Brian Dumphy, director in
charge of monitoring virus activity for Alexandria, Va. security
consultant Riptech, said of the limited U.S. impact.
David Perry, global director of education for
international anti-virus company Trend Micro Inc. of Tokyo, said the
virus appeared to be based on the code of notorious South American
script writer ``KAlomar,'' the suspected author of February's Kournikova
virus, who is said to live in Argentina.
``Mr. Alomar. has been writing new revisions one after
the other ever since the success of Anna Kournikova virus,'' Perry said.
But Alomar's activities have remained beyond the reach
of authorities. Perry said police had arrested a Dutch teenager for
using Alomar's virus tools to release Kournikova into ``the wild'' --
where anyone using Microsoft Outlook, who is connected to the Internet,
and lacking anti-virus protection may be hit.
``The virus writer of HomePage encrypted this one. He
has hand-manipulated the code so that it wasn't detect generically
recognizable as an Alomar-inspired program,'' Perry said of HomePage,
whose author is officially unidentified so far.
A handful of anti-virus companies rushed to issue press
releases announcing that they had detected the virus code and developed
software inoculations to it.
Several experts expressed surprise that computers users
would be vulnerable to what has become a well-understood method of
attack.
The worm arrives in an e-mail with ``HomePage'' in the
subject line and a short text message that says ``Hi! You've got to see
this page! It's really cool ;O).'' It contains an attached document
which the user must open to trigger the bug.
The trick document is labeled ``homepage.HTML.vbs.''
The virus exploits weaknesses in Visual Basic Script, or
VBS, a programming tool that Microsoft Corp. (NasdaqNM:MSFT - news)
offers to mainstream computer users to create custom software programs.
Security consultants such as Dumphy have advised
Riptech's hundreds of corporate customers to simply block programs using
Virtual Basic Script from entering company e-mail systems. Riptech had
received no complaints of HomePage attacks so far.
Trend's Web-based map (http://wtc.trendmicro.com/wtc/),
which tracks the most active viruses worldwide, showed HomePage with
1,534 user complaints in the last 24 hours, more than five times that
of the second most common virus.
Trend assessed the virus as a ``high'' risk to
unprotected computer users, although rivals such as McAfee
(NasdaqNM:MCAF - news) and Computer Associates (NYSE:CA - news)
classified the risk as ``moderate.''

Tull
I have wrote to Montel and Oprah and everyone I can think of.. I want
to help if I can ...
your pal Anna

Don: Thank you for sharing this with the group. We look forward to the
information that was presented in Denver. Judy

Jim,
Thanks for the reply, first off I heard long ago that when you go
threw a divorce you find out who your friends really are, but I also
believe that when you get a disease you find out who they really are
too,, I mean they are around at first and I think that is plain
nosey, and once it gets to the same old thing (when you really need
them) they are gone which is sad, but then I have found out who my
real friends are, and thank god for this group they really help me
alot. it has been really hard on me lately with the depression and
then to find out today that my counts are going up again which I will
probably end up back in the hospital damit damit ... sorry I just
hate this whole thing and my life right now it just doesn't seem that
anything is goin the way it is suppose too.. ok now that i got that
off my chest, who wrote the book "Life on the other side"? I would
like to read that one...
As far as pain meds when I work yes I do take them when I work I
couldn't work without them... and they know I do.I work at our local
hospital here in dietary department, I work out in the cafe. I pretty
much run the cafe, I start work at 5 am and out at1:30pm I love it..
I really love my job and the people I work with the management sucks
sometimes but that is normal in most places, but all in all it is a
good job...and I miss it...kinda...lol I am glad that you are finding
some relief with the group and reading I know the feeling I do find
it when I am here writing and reading.. Do you have instant messager?
if you do let me know your name on here and we can chat too, I chat
with some of them and that really helps too... I hope you are feeling
better and thanks again Jim you are a sweetie.. I to am glad I have
this group.. and you are so lucky to have a great wife that helps
with the group too.. what a great couple you are...
hugs
your panceatis pal Anna

In a message dated 1/29/01 6:25:06 PM Eastern Standard Time,
sunflower6668@... writes:

I just wanted to share the good news! My son (24) is engaged!!! We
love his fiancee. She is a dear. They are planning a September
wedding-yes, this year!

Hi Christine,
I know you are excited about your son's wedding and I'm very happy for you.
I remember how excited I was when my youngest son got engaged three years
ago. September isn't that far away so take care of yourself so you can enjoy
that happy event!!! Hope you are feeling better.
Hugs & Prayers
Carole

Pam: Thanks for the information on NDRF and the list of groups to choose
from to make a donation to. How exciting to reach 500. It means we are
getting the word out so others may have the same benefit of the wealth of
information that we have had since 1996 when we had only 86 members and were
really family. The largness of the group makes it a little harder to keep
up with all of the e-mails, however, we get the added wealth of information
from so many wonderful people. It is too bad we had to all meet because of
the disease. Hugs, Judy

Thanks you Betsy. I will have to ask doc about it.
Tricia Jensen
Glendale, California
pajensen@...

Dear Linda,
I haven't posted to you in awhile so i just wanted to check in with you
and see if you have had any relief since that Dr. was so unhelpful and rude
to you in the E.R. that day. "Belly Cramps!" I mean really! They seem to be
so out of the loop when it comes to Pancreas paitients sometimes. It's like
they don't have clue about what to do with us pancreas patients although
I've gotten to know the docs over at MUSC quite well and they treat me well.
One thing that some people do that is helpful is they get their Pancreas
G.I. or surgeon to write them a to who is may concern letter explaining your
condition to show the E.R. docs, and this helps sometimes. You might want to
ask about this. One friend of mine has his laminated and reduced to wallet
size and always has it with him when he gets sick and has to go to the E.R.
Just a thought. Hope yu are feeling better, I'm recovering well from my
latest bout and only had to stay 2 days in the hospital, a record for me!!
:) I hope you can get to feeling better soon!
Your Pancreas Pal,
Henry

Linda,
You are so sweet you too deserve a good week but mine is not starting off
that great, I went this morning to get my blood work done and then took Ali
to here story hour at the library Dora was sicker then I today and Ali who is
3 loves it and when I talked to her last night I told her I have to get this
lazy butt doing something so let me take her, it was all I could do to get
her there and then get back home and back to bed, I am not feeling great at
all. I am glad that I took her she loves it and it is a joy to watch her she
is so smart I don't know what is in the milk these days but kids seem so
smart to me..any way I got home and laid back down and fell asleep for awhile
till the pain woke me up the new antidepressandt have been working good for
me to sleep at night but not last night the pain won out it kept me up. and
about 4:30 my useless GI called and told me my counts are going up again
which I knew just from the pain..so now I have to wait for my family doctor
to call and tell me what to do next.. I am so depressed it isn't funny, it
just seems I do all that they tell me and nothing works.. I HATE THIS
DISEASE..... but that is where I am at so if I don't post for a few that is
why... I think they will put me back in the hospital again...same old chit ya
know.. hope you are doing ok.. you are a wonderful person and I am glad to
call you my friend....
Hugs and kisses
your pancreatis pal Anna from Michigan

I think this is very common with MSA. From what we
have been told, it is usually one of the first signs
of MSA, although rarely recognized as such until other
symptoms appear. My father had the wild dreams,
talking, even hitting during sleep for several years
before other symptoms appeared. I'm not sure what
causes it. Oddly, as my father's illness has
progressed, his sleep has become more calm, although
my mom says he still has episodes.
He recently went for a sleep study and now uses a
breathing machine at night. It has helped his sleep a
lot.
Melanie in OK

My husband Charlie has MSA. Within the last month he has had problems
in his sleep. Such as sudden jerking and at other times he will wake
me as he is talking in his sleep. Usually it is that he appears to be
dreaming and is having a nightmare. He will wake me with a sudden
scream or he seems to have the impression that someone or something is
after him. It has happened enough that I can tell when to wake him to
keep him from having a nightmare. He does not remember any of this the
next morning. I have read some post and brief information on sleep
disorders. Is this common? This is a new stage we are entering and I
must admit I have very little knowledge of this symptom. Betsy

Hi Jim,
Good for you. I mean, the work thing. I am fortunate. I am still
able to drag myself through the days and plan on continuing until I
can't any longer, so I totally understand that.
Are you getting different meds for the depression? I hope they can
get that under control.
Yes, I wonder too who the true friends are???????????????? I know it
gets old for them, but how do they think we feel.
Take care of you Jim, and I know you can get back to work for a while!
Be well,
Christine

It seems to work OK for me.
Perry Sennewald 804-244-0018

Hi all,
I just wanted to share the good news! My son (24) is engaged!!! We
love his fiancee. She is a dear. They are planning a September
wedding-yes, this year! They better get busy!
The cutest thing is this-her nephew has had to call my son by his
last name because that's just how they do it (he is three and very
articulate). When he found out Mike and Leah are engaged, he hugged
Mike real tight and asked, Now can I call you Uncle Mike?
Is that not too precious?
Love you all,
Christine

Hi guys,
I think that in a lot of ways we need to wade through this illness
with the same steps we use with grief. You know, denial, anger,
acceptance, etc.........because we are not the people we were and
probably never will be.
We have horses I will probably never be able to ride regularly due to
the pain. I used to cross country ski. I used to bike-a lot! I
used to rollerblade. And I hate the fact that I can't do those
things anymore. Being on the couch a whole Saturday is NOT my idea
of fun. Problem is, I am stuck at the DENIAL stage of the spectrum!
I don't want to accept it~
And in a lot of ways, I don't think we ever should. Because if we
do, that change of mindset takes us over the boundary that I am
afraid we will never cross back over.....
Does this make any sense?
Anyway, take care of you. and take time to smell a rose. or listen
to the laughter of a child.
Love you guys,
Christine

Good quote. Common sense will also reign
Barb
--
"In the spring, at the end of the day, you should smell like dirt."
Margaret Atwood

Elizabeth,
If she has Medicare, they will buy the wheelchair for her. Your best bet is
to get the doctor to prescribe it for her and get her to prescribe an
occupational therapist to fit her for it, That way, you can get the best
possible wheelchair - make sure you find an occupational therapist that knows
wheelchairs.
Take care, Bill and Charlotte Werre in Vorginia.

The list below contains examples of confusion of usages within our
language. Is there any wonder why immigrants retain "their" second
language???
1) The bandage was wound around the wound.
2) The farm was used to produce produce.
3) The dump was so full that it had to refuse more refuse.
4) We must polish the Polish furniture.
5) He could lead if he would get the lead out.
6) The soldier decided to desert his dessert in the desert.
7) Since there is no time like the present, he thought it was time to
present the present.
8) A bass was painted on the head of the bass drum.
9) When shot at, the dove dove into the bushes.
10) I did not object to the object.
11) The insurance was invalid for the invalid.
12) There was a row among the oarsmen about how to row.
13) They were too close to the door to close it.
14) The buck does funny things when the does are present.
15) A seamstress and a sewer fell down into a sewer line.
16) To help with planting, the farmer taught his sow to sow.
17) The wind was too strong to wind the sail.
18) After a number of injections my jaw got number.
19) Upon seeing the tear in the painting I shed a tear.
20) I had to subject the subject to a series of tests.
21) How can I intimate this to my most intimate friend?
Let's face it - English is a crazy language. There is no egg in eggplant
nor ham in hamburger; neither apple nor pine in pineapple.
English muffins weren't invented in England or French fries in France.
Sweetmeats are candies while sweetbreads, which aren't sweet,
are meat.
We take English for granted. But if we explore its paradoxes, we find
that quicksand can work slowly, boxing rings are square and a
guinea pig is neither from Guinea nor is it a pig. And why is it that
writers write but fingers don't fing, grocers don't grouse and
hammers don't ham? If the plural of tooth is teeth, why isn't the plural
of booth beeth? One goose, 2 geese. So one moose, 2 meese?
One index, 2 indices?
Doesn't it seem crazy that you can make amends but not one amend, that
you comb through annals of history but not a single annal? If
you have a bunch of odds and ends and get rid of all but one of them,
what do you call it?
If teachers taught, why didn't preachers praught? If a vegetarian eats
vegetables, what does a humanitarian eat? Sometimes I think all
the English speakers should be committed to an asylum for the verbally
insane. In what language do people recite at a play and play at
a recital? Ship by truck and send cargo by ship? Have noses that run and
feet that smell? How can a slim chance and a fat chance be
the same, while a wise man and a wise guy are opposites? How can
overlook and oversee be opposites, while quite a lot and quite a
few are alike? How can the weather be hot as hell one day and cold as
hell another?
Have you noticed that we talk about certain things only when they are
absent?
Have you ever seen a horseful carriage or a stressful gown? Met a sung
hero or experienced requited love? Have you ever run into
someone who was combobulated, grunteld, ruly or peccable? And where are
all those people who ARE spring chickens or who
would ACTUALLY hurt a fly? You have to marvel at the unique lunacy of a
language in which your house can burn up as it burns
down, in which you fill in a form by filling it out and in which an
alarm goes off by going on.
People, not computers, invented English and it reflects the creativity
of the human race (which, of course, isn't a race at all). That is
why when the stars are out, they are visible, but when the lights are
out, they are invisible. And why, when I wind up my watch, I start
it, but when I wind up this essay, I end it.
Have a nice knight,
Bill and Charlotte

To: exp11_po@...

(That's OK Henry, just take it ease, lay low, keep hydrated, and know we all
are thinking of you, and wishing you the best
Poncho )

Hello,
My mother is a 67 year old with MSA. She has seen Dr. Fouad
(cardiologist) for the orthostatic hypotension and Dr. Ahmed at the
Cleveland Clinic(neurology). I just wanted to see if I could meet
and share experiences with any individuals in Cleveland who have
SDS/MSA or OPCA. She has been deteriorating quickly over the last
two years and I will have to buy a wheelchair for her soon.
Thanks,
Elizabeth Park

Hi Deb,
No, I don't have one, but my hubby asked the same thing. Wow, that
might mean that would have to classify this disease as debilitating!
What a thought!
Be well,
Christine

I haven't been well for sometime but I have been reading all your
messages and trying to keep up, but it's very dificult for me. I'm 331
messages behind and I can't do any more
to-day. I'm getting the point where the delete and the back space keys
are my favourites and it's so frustrating I can't stay at for long,
But you are the first people I thought of when I received this message,
so here goes:.

Hi Rich,
Karyn STILL doesn't have access to her computer, so I'll try and
respond on her behalf, which I'm sure would be a resounding YES!!!
This is the kind of thing Karyn always has in mind when she thinks
about the various missions and goals of the Pancreatitis Support
Network. The first, of course, is to offer support and sharing of
information between all those whose lives have been so drastically
affected by this disease. But it is also to educate the "powers that
be", which includes health care professionals, the general public,
and
legislators and representatives of the legal profession as well.
SSI has a very detailed "list" of approved diagnoses for disability,
but CP is NOT currently on that list. THe only way the folks get
approved is by showing that their symptoms are equal in severity to
those of one or more of the approved conditions. The problem is,
many
of those symptoms are "subjective" (there is currently no blood test
to measure pain intensity, for example), so when the reviewers go
through the medical records, there usually isn't anything in there
they can read on paper, so it gets denied. It often takes going in
front of a judge before that kind of data is looked at seriously.
There needs to be much more public awareness of what this condition
can develop into for some patients. Unfortunately, there is a lot of
confusion about exactly what pancreatitis is, since folks present
with
it at so many different stages. A lot of folks actually do "get
better" eventually (i.e., suffer a few attacks of acute pancreatitis,
and then are never bothered again). Those are NOT generally the ones
who seek out message boards like this! But they may well be the
majority of patients diagnosed with "pancreatitis", so that general
diagnosis will probably never be enough to get added to the list of
approved diagnoses. There is not enough awareness of the difference
between "pancreatitis" and "chronic pancreatitis".
Public awareness is the key. This is a great topic for this message
to try and "brain storm" over. How do we get the message out there?
The old adage "think globally, act locally" comes to mind. Start
where you are - try and contact local TV and newspapers and get your
story out there. Lots of people found this board originally after an
article about Karyn was published in the local Indianapolis paper
last
summer. Contact your local congressperson, and your state senators.
Keep writing Oprah! ;-)
Other ideas?
--Tull

Colorado Neurological Institute

Movement Disorders Program

Russell Wood Lecture on PSP and MSA

April 27, 2001

12:00 noon - 3:00 p.m.

Swedish Medical Center

Program

11:30 - 12:00 Registration and Lunch

12:00 - 12:10 Welcome and Introduction

Lauren Seeberger, MD

12:10 - 12:50 "PSP: Diagnosis and Research Update:

Lauren Seeberger, MD

12:50 - 1:30 "MSA: Current Understanding and Future Directions"

Rajeev Kumar, MD

1:30 - 2:00 "Cognitive and Behavioral Aspects of Parkinsonian Conditions"

Jay Schneiders, PhD,ABPP

2:10 - 2:40 "How to Utilize Physical and Occupational Therapy to Maximize Independence"

Juliann Hanson-Ziatev, OTR

Amy Barr, MS, PT

2:40 - 2:55 "Issues in Case Management"

Carrie Friedman, LCSW

2:55- 3:00 Closing Remarks

Lauren Seeberger, MD
Don and Sylvia Summers attended this lecture along with about 60 patients and
caregivers from the Rocky Mountain area. The lecture was really good and very informative.
Don spoke to the group for a few minutes and gave out our new brochures. We were
very well received and enjoyed meeting and talking to the patients, caregivers and doctors.
Copies of the presentations made will be posted on the website as soon as they are received
from the doctors.

Don Summers, President
The SDS/MSA Support Group
"To Educate And Support"
http://www.shy-drager.com

My dear friend, Anna,
Please don't ever apologize for letting out your feelings. I think
each & everyone of us needs to do that every once in awhile. I know
I do. I was feeling the way you are a couple of weeks ago. Today
I'm so tired. The pain is there, but I'm just tired. I am trying to
catch up with my throid again. When it is so low, I hate it because
all I do is drag. Also, it could have had alot to do with the
weekend I had. You know you mentioned you use to have so much
energy, now you have none? That is exactly the way I am. I use to
play softball - Alot. Now I don't have the energy to even watch a
whole game. That really depresses me. Its a good thing I have the
girls to keep me going! They went back to school today, and I didn't
get my lazy behind out of bed until noon. I hate that! I gotta go.
Today is my husband's 45th b-day, and I have a cake in the oven. How
are you doing today? I hope you have a good week. You really
deserve it, my friend!
Lots of Hugs, Linda

Anna,
Hope your pain is on the upswing today. I too am supposed to be back to
work by April 15th or I'll lose my driving route (with UPS). I worked so
hard to even get this route (nice, friendly residential homes and
businesses)--When I go back to work (and yes-I say When--not "if") gotta
think positive--I'll have to go whereever they put me if after this date. I
am in pain everyday. I WANT TO WORK. I've been out of contact with almost
all my friends..only a few even call me anymore. I think they got tired of
me having to back out of plans (whether it was fishing, spotting) and they
just stopped calling now. It really makes me wonder who my real friends
are. I'm glad Lorrie found this group for me (and her and our families as
well). What kind of work are you going back to on Feb. 5th? Can you work
while taking the pain meds?
My depression has been really bad lately. Well, not just lately, actually
the last couple months. There have been days where I don't get out of bed
except to go to the bathroom. I'm on Prozac but my doctor says it's hard to
control the depression while taking all the pain meds? Sometimes I find I
have to force myself just to go downstairs and watch tv or talk to my kids
and Lorrie.
I read where some people were talking about their different "escapes". The
last few weeks I started reading (and I was never one for reading). My
sister-in-law sent me a few books which I'm finding very interesting. The
first one I read is called "Life on the Other Side". This book held my
interest to where I didn't want to put it down. I also read "Seat of the
Soul" (very inspiring of how I can help me) and now I just started reading
"Blessings from the Other Side" by Sylvia Browne. You have to have an open
mind when reading but I just got to a chapter that talks about how we chose
what would happen in this lifetime. ..which means I CHOSE THIS DISEASE?
Again, I enjoy reading now and I find my pain actually subsides some -maybe
it's my imagination or just that I'm so relaxed and fascinated with what I'm
reading. Who knows. I hope things get better for you and I'm really glad
to get to know all of you (now that I'm finally do my typing). This group
is great!
Your friend,
Jim Campbell (Pittsburgh,PA)

My favorite quote is from a speech given by then President Calvin Coolidge:
It was on Ray Kroc's (owner of McDonald's) office wall
Nothing can take the place of persistence.
Talent will not;
Nothing is more common than unsuccessful men with
great talent.
Genius will not;
Unrewarded genius is almost a proverb.
Education will not;
The world is full of educated derelicts.
Persistence and determination alone are omnipotent.
.........Mike

http://www.iprs.it/brainelsa/BACKUP_cd/tran2ter.htm
THE ETHICAL ISSUES INVOLVED IN NEUROTRANSPLANTATION IN HUMANS
MSA is mentioned in section 2.4 "Human brain diseases eligible for
neurotransplantation":
"Other neurodegenerative diseases seen as eligible for cell
supplementation therapy are multiple system atrophy
(MSA) and multiple sclerosis (MS). The parkinsonism of multiple system
atrophy of the striatonigral
degeneration-type (MSA-SND) may be eligible for a combination of the
grafting techniques currently applied to
Parkinson's disease and Huntington's disease patients (Wenning and
Quinn, 1997; Wenning et al, 1999)"
Dr. G.K. Wenning's work involves neurotransplants in rats which have
been treated chemically to have the same
symptoms as MSA(the Striatonigral Degenerative form).
Go to Pubmed
http://www.ncbi.nlm.nih.gov/PubMed/
and type in "Wenning GK Rat" and it will return 10 articles on this
line of research.
1:
Waldner R, Puschban Z, Scherfler C, Seppi K, Jellinger K, Poewe W,
Wenning GK.
No functional effects of embryonic neuronal grafts on motor deficits in
a 3-nitropropionic acid rat
model of advanced striatonigral degeneration (multiple system atrophy).
jid7605074. 2001;102(3):581-92.
PMID: 11226695 [PubMed - indexed for MEDLINE]
2:
Ghorayeb I, Puschban Z, Fernagut PO, Scherfler C, Rouland R, Wenning GK,
Tison F.
Simultaneous intrastriatal 6-hydroxydopamine and quinolinic acid
injection: a model of early-stage
striatonigral degeneration.
Exp Neurol. 2001 Jan;167(1):133-47.
PMID: 11161601 [PubMed - indexed for MEDLINE]
3:
Scherfler C, Puschban Z, Ghorayeb I, Goebel GP, Tison F, Jellinger K,
Poewe W, Wenning
GK.
Complex motor disturbances in a sequential double lesion rat model of
striatonigral degeneration
(multiple system atrophy).
Neuroscience. 2000;99(1):43-54.
PMID: 10924951 [PubMed - indexed for MEDLINE]
4:
Schocke MF, Waldner R, Puschban Z, Kolbitsch C, Seppi K, Scherfler C,
Kremser C,
Zschiegner F, Felber S, Poewe W, Wenning GK.
In vivo magnetic resonance imaging of embryonic neural grafts in a rat
model of striatonigral
degeneration (multiple system atrophy).
Neuroimage. 2000 Aug;12(2):209-18.
PMID: 10913326 [PubMed - indexed for MEDLINE]
5:
Puschban Z, Waldner R, Seppi K, Stefanova N, Humpel C, Scherfler C,
Levivier M, Poewe
W, Wenning GK.
Failure of neuroprotection by embryonic striatal grafts in a double
lesion rat model of striatonigral
degeneration (multiple system atrophy).
Exp Neurol. 2000 Jul;164(1):166-75.
PMID: 10877927 [PubMed - indexed for MEDLINE]
6:
Wenning GK, Tison F, Scherfler C, Puschban Z, Waldner R, Granata R,
Ghorayeb I, Poewe
W.
Towards neurotransplantation in multiple system atrophy: clinical
rationale, pathophysiological
basis, and preliminary experimental evidence.
Cell Transplant. 2000 Mar-Apr;9(2):279-88. Review.
PMID: 10811400 [PubMed - indexed for MEDLINE]
7:
Puschban Z, Scherfler C, Granata R, Laboyrie P, Quinn NP, Jenner P,
Poewe W, Wenning
GK.
Autoradiographic study of striatal dopamine re-uptake sites and dopamine
D1 and D2 receptors
in a 6-hydroxydopamine and quinolinic acid double-lesion rat model of
striatonigral degeneration
(multiple system atrophy) and effects of embryonic ventral
mesencephalic, striatal or co-grafts.
Neuroscience. 2000;95(2):377-88.
PMID: 10658617 [PubMed - indexed for MEDLINE]
8:
Wenning GK, Granata R, Puschban Z, Scherfler C, Poewe W.
Neural transplantation in animal models of multiple system atrophy: a
review.
J Neural Transm Suppl. 1999;55:103-13. Review.
PMID: 10335497 [PubMed - indexed for MEDLINE]
9:
Wenning GK, Granata R, Laboyrie PM, Quinn NP, Jenner P, Marsden CD.
Reversal of behavioural abnormalities by fetal allografts in a novel rat
model of striatonigral
degeneration.
Mov Disord. 1996 Sep;11(5):522-32.
PMID: 8866493 [PubMed - indexed for MEDLINE]
10:
Granata R, Wenning GK, Jolkkonen J, Jenner P, Marsden CD.
Effect of repeated administration of dopamine agonists on striatal
neuropeptide mRNA
expression in rats with a unilateral nigral 6-hydroxydopamine lesion.
J Neural Transm. 1996;103(3):249-60.
PMID: 8739837 [PubMed - indexed for MEDLINE]

Hi Rich, the problem I have is my GI says I'm not sick enough to
apply. And besides, we have a whole 3 GI doctors in our town! I
would have to go back to Ohio State. They have a on giant floor
(wing) just for GI problems, but not necessarily pancreatitis. I'm
just hanging in here for now. Everyone I know tells me to try to get
on SS, but I'm just not interested on doing so yet. If I can work, I
wanna work! I love my job, I love the kids & I love the people. The
agency itself really sucks, but everything else is great. Good Luck
on your venture. And I would be happy to help any way I can. I'm
from Ohio. Is there anyone else from Ohio that you know of? Just
wondering. I hope your week is a good one. And please, take it easy!
Lots of Hugs, Linda

Hi all,
Thanks to Bill and Charlotte, John and Terri for meeting with Maddie and
myself at the C & O Canal Historic site on such short notice. Maddie
enjoyed meeting Charlotte and John and finding out how others cope with this
disease.
Hope to meet up with the group again!
Thanks,
Frank & Maddie

There is now a mouse model of MSA! This could allow researchers
to test potential therapies. The next step would be to test on a
primate
model before any therapies could be tested in humans.
See http://www.lerner.ccf.org/pi/perez.html
Towards the end of that page:
"We have recently found that systemic overexpression the a1B-subtype in
all naturally occurring tissues causes a neurodegenerative disease
called
Multiple System Atrophy (MSA). This disease is Parkinsonian-like with
dopamine terminal loss in the substantia nigra but the atrophy is also
prevalent in the cerebellum and essentially progresses with age to
spread
to all domains of the brain. This is the first reported animal model for
MSA.
We are continuing to characterize our model and to determine the
mechanism. Since antagonists to the alpha1 receptor seem to improve the
symptoms in mice, this work may eventual translate to humans and provide
the first therapy for this debilitating disease. "
See also the Pubmed abstract for the research quoted above:.
To search Pubmed go to
http://www.ncbi.nlm.nih.gov/Pubmed
Nat Med 2000 Dec;6(12):1388-94
Overexpression of the alpha1B-adrenergic receptor causes apoptotic
neurodegeneration: multiple system atrophy.
Zuscik MJ, Sands S, Ross SA, Waugh DJ, Gaivin RJ, Morilak D,
Perez DM.
Department of Molecular Cardiology NB50, The Lerner Research
Institute, The Cleveland Clinic Foundation, 9500 Euclid Avenue,
Cleveland, Ohio 44195, USA.
Progress toward elucidating the function of alpha1B-adrenergic
receptors (alpha1BARs) in the central nervous system has been
constrained by a lack of agonists and antagonists with adequate
alpha1B-specificity. We have obviated this constraint by generating
transgenic mice engineered to overexpress either wild-type or
constitutively active alpha1BARs in tissues that normally express
the receptor, including the brain. All transgenic lines showed
granulovacular neurodegeneration, beginning in alpha1B-expressing
domains of the brain and progressing with age to encompass all areas.
The degeneration was apoptotic and did not occur in non-transgenic
mice. Correspondingly, transgenic mice showed an age-progressive
hindlimb disorder that was parkinsonian-like, as demonstrated by
rescue of the dysfunction by 3, 4-dihydroxyphenylalanine and
considerable dopaminergic-neuronal degeneration in the substantia
nigra. Transgenic mice also had a grand mal seizure disorder
accompanied by a corresponding dysplasia and neurodegeneration
of the cerebral cortex. Both behavioral phenotypes (locomotor
impairment and seizure) could be partially rescued with the alpha1AR
antagonist terazosin, indicating that alpha1AR signaling participated
directly in the pathology. Our results indicate that overstimulation of
alpha1BAR leads to apoptotic neurodegeneration with a corresponding
multiple system atrophy indicative of Shy-Drager syndrome, a disease
whose etiology is unknown.
PMID: 11100125 [PubMed - indexed for MEDLINE]

Hi all......

I just want to drop a quick line and let you know I need to take a sabbatical from the group for awhile. I will try to read al the posts and keep up with everyone....I hope you all have pain free days and nights.

Becky

Pam,
This site points to an error in the stem cell opposition. They claim that we
should not use stem cells because it is cloning but here they are cloning
adult cells. They must clone cells to have a chance of curing these
diseases. Just because they clone cells does not mean they will (or even
can) clone a whole human. Although they have altered a single gene in an
blastocyst - placed it in a womb and got a baby with a specific trait in his
blood to cure his sister of a rare blood disorder. Her baby brother is alive
and well and she is too because of this "cloning".
John A. Hardy, Ph.D., is internationally known for his research on
neurodegenerative disorders. His team at the Mayo Clinic's Jacksonville
facility leads the cloning of two genes, one on chromosome 4 and one on
chromosome 2, that are believed to be involved in familial forms of
Parkinson's disease. Once the genes are cloned, their functions could be
studied and the results evaluated for relevance to the more common, sporadic
type of Parkinson's disease. The group also endeavors to create a new and
better mouse model that will clarify the role of alpha-synuclein and other
proteins in cell death and degeneration. If successful, such a model
could prove invaluable in studies of new treatments for Parkinson's disease.
It has been suggested that nerve growth factors, particularly GDNF, may be
therapeutic in Parkinson's disease.
Take care, Bill and Charlotte

Linda,
Thank you so much.. I feel the same way I post and hope that I can help
more then one or touch one like you all do me.. sometimes I just sit here and
read and cry, and laugh, I have become very dependent on the group, it keeps
me going specially lately when I sit and think about what I have put into
this in such a short period of time and feel like just saying forget anymore,
but I read from all of you about things that you are going through and it is
so much more then I have and I have to keep going.. plus there is that
promise that I have made to a loved one that I would never give up.. and it
isn't me to give up on anything I like to know that I give it all a fight and
then if it doesn't work I know I have tired.. I think the hardest part about
this disease is that it doesn't just affect us but our loved ones, it has to
just as hard on them when they can't do a think to help and watch us hurt I
know I hate to watch anyone I love go through that... But it is hard at
times, when things are being cut off from what you think was a normal life..I
think I am really having cabin fever here, I need to get out just to much
pain and no energy, I got out friday to go to the doctors and thought maybe I
would go shopping or something afterwards but the energy just wasn't there,
what happened to the old me that had enough energy to 4 people.. I miss her
if anyone finds her send her my way please...lol
sorry to un load but dang I feel a little better now thanks all...
I hope you had a good weekend....
Hugs and kisses
your pancreatis pal Anna from Michigan

Sandy
That is such a good idea and I think tomorrow I will start on mine.. I
wish I would have thought of it earlier I have some work ahead of me to get
it going...lol but once it is started it would be easy to keep it updated...
thanks I love the idea...
Hugs and kisses
your pancreatis pal Anna from Michigan

Pam,
did you notice the Keynote Speaker - Ronald D.G. McKay
I could not get the abstract but there was also a talk on (7-Preclinical
Primate & Clinical Trials)
which I would like to see.
I don't know if this is that talk but the first abstract on this site is
talking about fixing glial cells in monkies!
http://www.asntr.org/bin/news_index.cgi
All kinds of interesting hopeful abstracts at this site
Take care Bill and Charlotte

In a message dated 01/23/2001 12:11:19 PM Central Standard Time,
tull@... writes:

Karyn is about to "climb the walls" at home without access to her
computer. I'm going to try and print off a bunch of the messages and
take them to her tonight. I hope that will lift her spirits. She
really misses you all!
Cheers,
--Tull

Tull, you are such a wonderful friend for Karyn. I appreciate all you do to
help her out as I am just so grateful for all she has done for this group.
Sandy

In a message dated 01/23/2001 12:03:39 PM Central Standard Time,
tull@... writes:

This seems to be another common problem on this disease. Karyn has
had lots of dental problems as well. One of her doctors once told
her
it's a combination of 2 things. The first is when you get nauseous
so
much, all that extra stomach acid/digestive juices that wind up in
your mouth will eventually attack your enamel and hasten tooth decay.
In addition, one of the side effects of so much of the medicine folks
have to take for pain, sleep, depression, etc, is extreme dry mouth.
Saliva actually helps protect the teeth and gums from infection, and
keeps them healthy. Without it, or when it is so severely reduced,
other dental problems can occur.

Tull, thanks for this wonderful information. My teeth have deteriorated so
much in last couple of years and I really didn't understand the reasons why.
This makes so much sense though. I also really appreciate the information
about the products on the market now to help with the dry mouth. I've not
heard of these products and have had a really difficult time with dry mouth.
Sandy

http://neuroregeneration.org/

For Parkinson's Disease and "related neurodegenerative disorders"..
that's us!
Very interesting to read about what types of research are in progress.
http://webproject.ninds.nih.gov/prototype/pd_mockup/Udall_Centers.htm

Hey guys Thanks for replying, (Linda) - yes, we can do something about it!
Get your Dr. to say something to his/her local ama. (Mike) You are right, we
can make a noise and get cp recognised by the ssi powers that be, but we have
to speak loudly!! because ,as you so rightly say, there are a lot of voices
all speaking for the same $.
I believe that the first thing we have to do is get the Dr's recognising the
debilitating effects of the disease and have them stress the financial
aspects as well as the disabling results of having this arwful affliction.
Is there a hospital or university that has a Panc. wing or specialises in
Panc.? If so we need to contact them and see what kind of help they can give
us. A lot of you have mentioned the MUSC, What is their story?
Let's see if,between the bunch of us, we can't get our condition on the front
burner.
I will do my best...anyone care to join me? I know we all have good days and
bad days but maybe if someone is having a bad day someone who is having a
good day could pick up the slack. Maybe I am being presumptuous, but I know
how difficult it is for me financially and I'm relatively sure I am not alone.
Feed back please. Aloha, Rich.

Very interesting site. These doctors are working on the cutting edge of
new neuro repair technology including stem cell research.
http://www.asntr.org/

Jerry,
As Senator Bayh indicated the key is "should H.R.17 reach the Senate floor."
Last year both [H.RES.414.IH] and [S.2015.IS] were never let out of committee
and allowed to reach the floor of either the House or Senate by the leadership.
Bayh will probably support the legislation quietly as the state is a
conservative state. He has supported similar issues in the past.
Lugar would be a powerful ally if he could be convinced to support stem cell
research. He has not issued press releases on abortion and has supported birth
defect legislation in the past. He is a smart man as he was a Rhodes scholar.
Have you considered a visit to one of his offices in the state? I would work on
the angle of helping the victims and money saved from patient care by Medicare
as he is a fiscal conservative. I would also work on the not abortion as the in
vitro blastocyst can not become human unless it is placed in a womb and will be
destroyed anyway argument. Also point out that the Bill was introduced in the
Senate by another Republican Arlen Specter (who is from another state with lots
of agriculture).
Take care, Bill and Charlotte

Did anyone else try to get to the chat room with this new link? Bill
says he had trouble. I had another friend try it and they made it
there fine. Let me know if there is a problem so I can fix it by next
Sunday's chat time.
Hugs,
Pam

NDRF is the National Dysautonomia Research Foundation. They support
autonomic disorders including MSA/Shy-Drager. I often point
out several of their webpages to new members:
http://www.ndrf.org/physicia.htm
http://www.ndrf.org/MSA.htm
http://www.ndrf.org/ndrf_newsletters.htm
http://www.ndrf.org/Seminars.htm
Their main web page is at http://www.ndrf.org
Hugs,
Pam

Judy

Hi all,
There is another round of viruses going around. Beware of ANY
forwarded email message that has an attachment (especially with Patricia
Like as a sender of the message). If you do not have an up to date
virus checker, you may want to avoid all attachments.
Take care, Bill and Charlotte

Kathy
There are two members on this list with the name"Mary Ann"....My husband's
name is Pete...Mother is Mable....It's ok if you got us mixed up....Best
wishes with your swallowing test...
Mary Ann-
From: "kathy thompson" <ktrnus@...

Hi Anna,
Thanks for the info on paxil. A really good friend of mine also said
to ask my doctor for it. I already have it on my list of questions.
Thanks again. How are you doing?
Lots of Hugs, Linda

Hi all,
If you use dietary supplements - check these out.
Bill and Charlotte
Nature's Plus Brand Dietary Supplement
Recalled
Melville, NY (SafetyAlerts) - Natural Organics is
recalling
approximately 9,800 bottles of its Nature's Plus
dietary
supplement because the product may be contaminated
with salmonella.
No illnesses have been reported.
The product was distributed nationwide from February to
May and involves bottles of Nature's Plus brand
supplements that contain the raw material pepsin, the
manufacturer stated.
The company said its products had tested negative for
salmonella, but the recall was launched after random
samples tested at a supplier, American Laboratories
Inc.,
of Omaha, Neb., indicated the possibility of
salmonella.
Salmonella can cause serious and sometimes fatal
infections in children, the frail and the elderly.
Healthy
persons infected with salmonella often experience
fever,
diarrhea, nausea and vomiting.
The products being recalled are packaged in brown
bottles with yellow and green labels. Lot numbers are
on
the bottom of each container. They were distributed
between Feb. 12 and May 1.
Product affected by the recall include:
Digestive Enzyme, product number 4450, lot
number 1008884.
Nature Cleanse Botanicleanse Tabs, product
number 1138, lot number 1008597.
Betaine HCL, product number 4370, lot number
1006874.
Ultra-Zyme, product numbers 4452 and 4453, lot
numbers 1007116, 1007110, 1005942, 1005943,
1009596, 1009520, 1007562 and 1006906.
Consumers can return the products to the place of
purchase for a refund. Questions can be directed to the
company at 631-293-0030.

Hi All,
Here is an interesting website - a look at the disability rights
political movement from a historian's view.
http://americanhistory.si.edu/disabilityrights/index.html
Take care, Bill and Charlotte

Kathy: Try to get some Chem II strips from your pharmacy so you can do a
home check when you think there is a UTI. When you do the home check though
make sure you use a clean cath for an accurate test. Then if it shows signs
of a UTI take a urine sample in and explain why you feel there is a UTI.
They cannot argue with you because the hospital ER uses the Chem strips for
a quick check also and if it shows possitive then they run a urine study to
see what kind of bug in present and how to treat it. Hope this helps, Judy

Hi Pam and Don: I looked up the web page and was glad to find the links to
Jeff's and Charmayne's plus some others for lots of good information. We
are looking forward to hearing more regarding the conferance. Was
interested in the name of it the "Russel Woods lecture" Did they help
organize it? Lyn and Russ were one of several special couples we met at the
Montreal conferance in 1996. There was a lot of good sharing among us. Lyn
will miss Russ greatly and the rest of us will also. Hugs, Judy

Hi Vera, I finaly called the doctor today and told him I thought Dave has a UTi. He ask me what kink of symptoms he was having and I told him same as always, none. I explained to the doctor that I could look at his urine and tell if he had one and that it had a bad odor. He doesn't want a urine specimen nor does he want to treat the UTI because he is afraid Dave will become resistant to antibiotics. I am afraid...... Every time I have taken a urine specimen to our primary doctor, he never questions me, he will test the urine and every time I have been right.

Today, I also talked with the doctor about a supra pubic cath. He said that it would not decrease his episodes of infections anymore that the cath he has now. He still hasn't got all of the info about the procedure I wa telling you about and said he would get back with me on it in about a week.

I am very frustrated and afraid that Dave will get really sick from this UTI. What should I do?

Take care, Kathy

Hi Anne, How are you doing? The nurse at school told me that they
use to have to keep it in the clinic, and the kid had to go down &
she had to watch them do it to make sure they did it. Now its OK for
the kid to carry it with them, in case they have an attack they can
do it quicker. Halie has allergies, not asthma. So, go figure. The
form the nurse gave me to take to the doctor was different than the
one the doctors office filled out. Go figure!?!?!?!?! I hope you
are having a good weekend. And, please, don't ever worry about
nosing in because what I write it open to anyone & everyone. Thanks
for caring enough to ask.
Lots of Hugs, Linda

In a message dated 01/22/2001 12:59:29 PM Central Standard Time,
mlkarns@... writes:

I am doing ok I guess. I have been worse, and I have been allot better. I am
going to the doc at 2 pm to day, and I think he will give me more pain meds
and tell me to stay off food for another week. Then if things don't get
better he will probably put me in the hospital.

Michael, been down with the flu so haven't been reading the posts. I hope
you at least got some relief from your doctor and feeling better now??????
At least if you go to the hospital you should be able to get better pain
management maybe.
Sandy

Hi Sandi:
You asked about my husband and what I am doing for him to help with
the MSA. Fred is now 60 ,but was 56 when he was Dx with the MSA. Will
at first they DX him with PD like so many other's on the list. You
said that Dee is in her 50's, that is the age of many on this group,
but then there are some that have it that are in there 70's and
other's are only in their 30's & 40's. At any age ,your to young to
have it.
He is on sinemet cr, mirapex, selegiline,clonazepam,pro-amatine &
bractrim. He has P/T, I stretch his legs and we have exercise bike
here that he does. He also try's to walk.
He had done pretty well until this year. Now it seem as if it is
progressing. He now needs to use his w/c and the walker, but still
try's to do as much as he can.I think the best thing for him is to do
a little and then rest some. He seem to always want to over due and
then he will lose his balance and fall. But it's hard to get him to
do this.
The bladder isn't working anymore, so we have to do the in and out
self cathater ( Fred call's this his little Jump start).He isn't able
to write anymore, or do the small things with his hands. He get's the
pain in the back of the neck from the head going forward, but his
doctor told us to try the neck collar and see if this helps and Fred
feels it does. So he does that.
The rest is to eat right, drink alot of water, and make sure that he
has his meds at the same time always. He will have some down time if
he does.
I know that you will fine the answers to any of the question here on
this list, or at least someone will try.
Always Vera

Christine,
Thank you for the hugs this group helps me more then any doctor and you
are right I am getting use to it.. but goof you never told me who you see at
U of M...lol you referred to the doctor as a her and mine is DR Elta and is a
her too so just wondered if it was her.. I like her she just doesn't make me
better...lol but none of them do...lol I am supposed to go back to work the
5th of Feb. and I am not sure how I am going to be able to if I keep feeling
like this.. the pain seems to be getting worse instead of better as he told
me it would.. give it time he says.. I had a couple of good days and now I am
feeling bad again.. I hate this disease, sorry for go on I don't think my
meds are working...lol I haven't felt this bad with the depression thou this
whole disease and I am not sure if it is because he has changed the
antidepressant or if it is cuz it has cut me out of life so to speak .. like
I said I haven't been out and seen my friends and the ones I usually talk to
on here I don't see here like I use to so I haven't talk to them either so I
feel really cut out .. I haven't even been able to be on this lately...Well
enough rambling I am sorry ... hope things are getting better...
love ya
Hugs and kisses
your pancreatis pal Anna from Michigan